Advocate, Educate, Celebrate!

By: Adrienne Rice-Fernandez

This quarter, Living with Lupus magazine is focused on taking the reins of your lupus and making the most of life with a chronic illness. Over the past decade that I have worked for the Lupus Foundation of America, Greater Ohio Chapter (LFA,GOC), I’ve had the privilege of speaking with many lupus patients. Every patient is different. Some have a positive outlook, and some struggle to remain optimistic. Often it depends on whether a patient is having a flare, their support system, their spirituality, and previous life experience(s).

All lupus patients know that we have periods of remission and flares. Sometimes we feel great, and other times we feel awful. So, what can we do? Sometimes it’s about taking back the control we’ve lost. One of the ways we can do this is through the power of advocacy. The Missouri Foundation for Health defines advocacy as,

“any action that speaks in favor of, recommends, argues for a cause, supports or defends, or pleads on behalf of others.” At the LFA, GOC, we take it a step further. It is important to advocate not only for others but also for oneself.

You have seen us and many of our volunteer advocates at the Ohio State Capitol and Capitol Hill in Washington D.C., advocating for lupus funding as well as creating awareness. These are both incredibly important actions. There is also a lot of communication and letter writing that goes on behind the scenes in support of or opposition to many bills that are proposed. It takes a lot of effort to weed through the political bureaucracy and figure out what is important to the lupus agenda. Lupus patients, even when they aren’t feeling well, can take control by participating in letter writing and phone calls to state and national legislators.

When the office puts out a call to action, take back your power by responding. These small actions have big consequences, and we encourage you to get involved and do what you can.

Another way advocacy can help us, as patients, feel better about our circumstances, is to become self-advocates. Self-advocacy is about communicating your needs, speaking up for yourself, educating yourself, asking questions, and working with your provider to create a healthcare plan that works for you. Many of us feel intimidated by healthcare professionals, but let me tell you, there is no dumb question. The more you educate yourself by asking questions, the more informed you will be and the better you will feel about the decisions that are being made regarding your plan of care. It is ok to ask your doctor what side effects can be expected, explain your limits, and just say no. However, make sure you understand the consequences before you make these decisions. Have open and honest conversations with your physician and make sure if you don’t understand something that you ask for clarification. The more knowledgeable you feel, the better positioned you will be to take control of your health and ensure you are not just a bystander in your lupus journey. You can take the reins today by being an advocate for yourself. And if you are not up to the task because of how awful you feel, appoint someone you know. Make sure you plan for this ahead of time and ensure your advocate knows your wishes. Put it in writing so they can refer back to it.

Educating yourself is also another way we encourage lupus patients to empower themselves. We can educate ourselves by asking questions when we are at the doctor’s, reaching out to organizations like the LFA, GOC, and seeking resources that come from reputable sources. Unfortunately, this excludes Dr. Google. But the good news is that there are plenty of resources like government agencies, hospitals, medical schools, and peer-reviewed journals. One way to ensure that medical information is justified is to validate the author. Where did that person receive their training? Are they board-certified in rheumatology or another specialty? Do they have a PhD? Where do they work? You can also validate medical information by doing a fact-check search. When in doubt, ask your doctor!

It is important to remember that we are not trained medical professionals (at least not all of us), but that doesn’t mean we cannot gain knowledge. The more we know, the more we can use our intellect to help manage our disease. In my job, I encourage all lupus patients to celebrate and honor their journey. No, it is not fun having lupus. I know this firsthand. However, we can learn to celebrate our strengths and foster a positive outlook for all we’ve overcome. You may have recently been hospitalized and worked very hard through physical and occupational therapy and finally made it home... congratulations! Perhaps you couldn’t get any work done last week but this week you managed to make lunches for your kids and clean the bathroom… well done! We can celebrate our successes, big or small, by recognizing what we have done. Try not to compare yourself to your healthy friends and neighbors. They won’t understand your struggle. But make sure you are gentle with yourself, and you give yourself credit where it is due. Celebrate your success(es). You deserve it.

There are many more things that can be done to help you take the reins of your lupus, feel more in control, and foster better self-management. Consider some of the following:

• Practice gratitude – always be thankful, even for the little things. This mindset goes a long way in creating a path toward better health and seeing things from a different perspective.

• Journal – this is an excellent way to track symptoms and remember important conversations to have with your doctor.

• Set goals – make a list of things you would like to do. Check them off as you accomplish them. It will make you feel good.

• Focus on quality – do what you need to do to stay healthy. Eat well, don’t smoke, limit sun exposure, etc.

• Practice self-care – we call it “Self-Care Sunday”. Each week take time to do something for yourself. Whether it’s a power nap, yoga, or a facemask, do something to prioritize yourself.

• Stay connected – make sure to reach out to your social network and even volunteer if you are up to it.

• Practice acceptance – know that some days will be better than others. Permit yourself to rest and don’t push yourself to do more than is acceptable.

• Prioritize your mental health –check in with yourself and be sure that if you need additional support, you reach out. There is no shame in needing a counselor to deal with your situation.

As patients, we can live with lupus successfully and make the most out of life with chronic illness. We can better manage our disease by advocating for ourselves, becoming educated about lupus, and celebrating our successes! Don’t sell yourself short. We are worth it and deserve to feel in control and accomplished. Take the reins of your lupus and don’t let go!